Advisory Group
Invitation to join our Advisory Group
We are the National Down Syndrome Policy Group, or NDSPG for short.
We work with the Government to help make life better for all people with Down syndrome.
Our Advisory Group zoom meetings are for adults with Down syndrome to share and record their views with us.
The NDSPG wants you to tell us about your life and what is important to adults with Down syndrome.
Our Advisory Group meetings are a change to have your say on things like having paid jobs or choosing where you live.
About Advisory Group Meetings
We hold our Zoom meetings from 6pm to 7.30pm on the third Monday of each month.
In our meetings we talk about your life with Down syndrome and the things that matter to you.
We use what you tell us to help the Government write the Guidance for the Down Syndrome Act.
The Down Syndrome Act is the Government’s new plan to help make life better for all people with Down syndrome.
The Guidance is a set of instructions on how the Down Syndrome Act should work to help all people with Down syndrome in England.
What happens in Advisory Group Meetings?
The meetings are run by the facilitator team:
Heidi, Ed, Florence, James and their supporters.
Many other adults with Down syndrome join the online meetings each month.
The Advisory Group works on lots of things like writing to MPs or answering questions from the Government.
At every meeting we have a list of things to talk about called an Agenda.
We work through the Agenda to share news and updates on the Down Syndrome Act and our work with the Government.
Sharing our work with the Government
The Government needs to hear from people with Down syndrome to make sure they get the new plan right
When we tell the Government about our work, we don’t share your name or any other personal details.
We only tell them about the things you have agreed to share.
Our meetings are recorded and saved to a secure private channel that only we can see, nobody else.
We record our meetings so that when we we share your stories we can check our facts are correct
Remember:
You can bring someone to our Zoom meetings to help you if you want to.
The person you bring is on the Zoom call just to help you in the meeting.
They can help you speak but they shouldn’t share their own opinions.
They can help you speak but they shouldn’t share their own opinions.
We want to hear about your ideas and your experiences.
Consent form
Before you can join our meetings you must fill in a consent form.
You can find the consent form by clicking here.
We need you to fill in a consent form so you understand what our Advisory Group is and that you agree to join
To find out more about our Advisory Group please email us:
The NDSPG supports people with Down syndrome to have a say in the formation of policy in matters that impact their lives.
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